Spasmodic Dysphonia

Budding singer-songwriter Crystal Goh was diagnosed with Spasmodic Dysphonia, a rare neurological condition that left her without a voice for two years. She didn’t know if she’d ever sing again. But through sheer will, and renewed strength with the help of her friends, she found her voice in the midst of pain – by offering hope to those in need instead.

Goh founded the Diamonds on the Street initiative to work with girls living in a shelter, and the children of prison inmates, to turn their reflections into songs. Today, she continues to help at-risk youths to derive meaning from crises and to transform pain into new narratives about their lives and possibilities. All through music and songs.

Crystal Goh

When we watched her unique and immensely moving rehearsal presentation, we felt her pain and her potential. Without giving too much away, we spoke to her to get some insights into her condition and background.

We were really moved by your rehearsal talk. And it seems like it’s really not easy for you to engage with ​people. How do you deal with people on a regular basis? Would you prefer to just write them notes and not speak?

CG: I used to write notes a few years back right after I lost my voice. After a while, I crafted an FAQ (of my condition) and simple signboards that I would bring to the places I commonly frequented.

However, over the years, my voice has improved and I have learned to pick quieter environments to hold conversations. I also speak with shorter sentences and usually keep my gatherings small too, so that there is space for everyone to talk.

To me, nothing beats face-to-face conversations. However, if the conversation gets too technical or if I find myself having to use longer sentences to communicate and do not have the luxury of time to pause in speech, my friends know that I can always provide details through a later email, note or so.

How often do you work on new songs?

CG: I have been very fascinated with the process of healing and use songwriting as a craft to discover truths about healing every few months.

Often, when I experience a difficult emotion, songwriting becomes a safe space for me to explore my thoughts, and eventually to practise compassion on myself or on others. Songwriting is a way for me to regain control over parts of my life.

Is Diamonds your full time work? If not, then what do you do?

CG: Diamonds takes up a large portion of my time. However, I also regularly feed my curiosity in certain passion/topics by taking on various songwriting and writing projects.

Have you met other people who’ve also had Spasmodic Dysphonia?

CG: Yes, I reached out to an award-winning children book writer, Emily Lim, ​who wrote a fantastic book that was inspired by her journey with Spasmodic Dysphonia.

Her book, Prince Bear & Pauper Bear, was so hopeful that I sought her permission to turn it into a musical drama, so that the children of prisoners (whom I had been working with then) could perform it to their loved ones. Emily and I have since developed a really beautiful friendship.